The Myositis Association

“Membership is free. Upon registering with TMA, an individual becomes a member and is entitled to newsletters and various incidental benefits. The membership does not convey a right to vote concerning organizational matters.”

“The Form 990 is first reviewed by and approved by the Executive and Finance Committees and then circulated to the full Board for comment prior to filing and release.”

“The conflict-of-interest policy is acknowledged and disclosure forms are signed by each Board member and officer at the beginning of his or her term of service. The policy requires that the member or officer make the organization aware of any conflicts. Subsequently, an annual positive confirmation is required from each member or officer. The review of these annual confirmations is delegated to the Chair of the Board and Executive Director in consultation with legal counsel. If a determination of a disqualifying bias or a conflict of interest is found, necessary action is taken pursuant to the conflict-of-interest policy.”

“Executive Director compensation is documented in a written employment contract. Compensation is reviewed annually based upon performance objectives established by the Board at the beginning of each year as well as market compensation considerations. This review is conducted by the Executive Committee of the Board, acting as a Compensation Committee. All members of this Committee are independent directors. The Committee's recommendations are then brought to the full Board for consideration. Deliberations are documented in minutes.”

“The organization's audited annual financial statements are published on its website. Governing documents and conflict of interest policy are available by request. TMA provides Guidestar.org with a digital copy of its Form 990, which is available on that site and others.”

“OTHER PROGRAM SERVICES 4: Other Program Services: TMA's other initiatives are focused on awareness, advocacy, and clinician outreach. We are continually updating approximately 13,000 members through monthly e-newsletters, quarterly magazines, videos on YouTube, social media channels, and the highly trafficked website myositis.org. Our efforts to elevate the understanding of myositis among the general public are very important. Because these diseases are very rare, advocacy on behalf of the families affected by myositis is a core component of our mission. In 2023, we organized Myositis Awareness Month from May 1-31, 2023 and we participated in World Myositis Day on September 21, 2023. TMA also provides resources for healthcare professionals, to ensure that they receive the latest information on treating myositis and communicating effectively with their patients. We publish various resources, including our "Myositis 101" physician booklets, disease overview brochures, and infographics about health equity, nutrition for autoimmune patients, and more. In 2023, we hosted a myositis research symposium for physicians and experts during our International Annual Patient Conference and we co-hosted a scientific annual meeting with the International Myositis Assessment and Clinical Studies Group (IMACS) and the Cure Juvenile Myositis (JM) Foundation.”